Originally Posted by MAT52

Hi David. I'm sorry that, as an infrequent visitor, I failed to wish you advice or good luck with your rheumatology appointment. But your very comprehensive account is one I can relate to and also helps me progress a little further with my own very similar problems.

Like yours, my rheumatologist tested my eyes and salivary glands for dryness back in September. Neither showed positive and as my Ro and La antibodies were negative, along with all the others - he explainsd at the second visit that I do not have a connective tissue disease. I asked him how my diagnosis of RA some four years earlier, by another rheumatology consultant, fitted in to the picture. He shrugged and said it is all about EULAR criteria. It is possible to have seronegative (autoantibody negative) bloodwork and still have RA - but not the others. He explained that there are centres in the UK which need a certain amount of diagnosed and treated patients in order to qualify for research funding - so there are financial incentives for these centres to break with the criteria and diagnose seronegative Lupus. But not in Scotland where I live he says.

He was also unwilling to allow my diagnosis of RA to remain on the list of my conditions so it has been changed to polyarthritis (unspecified) now. This has meant that busy GPs in new practices I'm having to register with have assumed there is a psychological dimension to my symptoms - which they don't have time to pursue so they just suggest I have health anxiety and that I go online for wellbeing counselling. Well only one has suggested this so far but I live in hope (not).

I know that I did have RA/ inflammatory arthritis. I am very sure that the two consultants I saw would not have kept me on such potentially toxic immunesuppressant drugs had I not clearly presented with synovial swelling in my joints and tendons for a few years. But it has gone away now and the new doctor is unwilling to take their word for the RA or accept my photos as sufficient evidence - although he says he agrees I did meet the criteria then. But obviously I don't now.

Meanwhile no one has given me any satisfactory explanation for why my small fibre neuropathy appears to be advancing, why my gums, lips and nose and scalp all tingle constantly and feel tight and sore, why my eyes feel hellishly tight and dry and why I'm now dizzy and disorientated - can't cope with moving objects under my eyes, feel I'm going to fall if I look up or swivel or why I can't judge patterned flooring, steps, uneven surfaces. After a few years of intense pain my feet and ankles feel numbed and so do my hands and face to a degree. I still have pins and needles but otherwise I have the unpleasant sense that I'm slowly dissolving. I wouldn't use this description to a doctor though - have enough trouble getting them to take my symptoms seriously!

My own theory is that my problems are autonomic ie dysautonomia and either relate to a Mast Cell Disorder or to an unusually neurological form of Sjogrens. My symptoms conform most of all to MS but this has been ruled out by brain MRI and lumbar puncture just over a year ago. I'm not certain at all that I will ever find a neurologist or rheumatologist who will support the idea that I have an immune mediated neuropathy -let alone try and get me into some kind of modifying treatment again. I'm highly allergic/ hypersensitive to chemicals and unknown environmental factors have always triggered allergies since I was tiny. I have had severe allergic reactions to most of the drugs I've tried over the past five years so it will take a brave doctor to try me on more. This is why Mast Cell Disorders have been suggested to me by friends.

Have you researched these yourself at all yet?

I do have fluctuating inflammatory markers and paired Oligloclonal bands which suggest that something systemic is occurring but my rheumatologist thinks there must be other explanations for this that are non rheumatic. I don't understand why this isn't taken more seiously - especially because I have high blood pressure and mildly diseased carotid arteries and both my parents died suddenly and prematurely of heart failure relating to atherosclerosis.

I see a young neurology registrar at the end of this month in a large Scottish teaching hospital. As far as I can tell her special interest is in Parkinsons Disease so we may not be destined for each other as doctor/ patient. All I'm hoping for now is to be believed. After that I will try and broach the subject of treatments. I don't think continuation/ progression of my currently dissolving state is an option I can just accept.